Multiple Sclerosis and Change

BrainLifeGoalsAn excerpt from the blog of Susanna Van Tonder

I received my MS diagnosis in the end of 2016 after having had invisible symptoms for more than a decade – the fatigue, the dragging, the loss of balance at times, my slower speed (no matter how fit I was – yes drama school and physical exercise go hand in hand, my nerves were just not able to transmit the signals as quickly as with my healthy classmates I realize this only now) and the tight and stiff muscles. I thought they were due to my inability – to my lack – to something I was actively doing wrong (oh the preconceived subtle subconscious messages transmitted through our ableist society) so I have basically ignored my symptoms and pushed through, applying every possible health advice I could find. Little did I know back then, that it was not related to some kind of personal shortcoming or of will power but to my immune system silently attacking my central nervous system. Reflecting back, I feel as if we live and breathe ableist notions without giving it a second thought – we simply do not challenge the competitiveness, the ideas that we as individuals may simply never ever be good enough, that we always have to do more – to be more- to be “good” enough. The truth, however, is that we are enough: the soft, kind, imperfect beings and that is what makes us human with all our failures, mistakes and experiences. It is as simple as that – in an odd way magnificent and heart-breaking at the same time. All a matter of perspective?

Well fast forward past the feelings of inadequacy, of “being wrong” – my body decided to make things visible in 2015. Took ‘em about a decade to come to that point, I really should fire the manager for not reporting the malfunction earlier. So, prior to that episode which triggered a few more invisible and silent relapses until my final diagnosis October 2016; nobody knew, nobody noticed, and how on earth should I have known? I never knew a life where fatigue did not exist – due to MS and exacerbated by hypothyroidism, another condition which took forever to be diagnosed and for which I finally received treatment 10 years after its onset. But hell, like they say – you cannot change the past, but we have full responsibility over our future and maybe even more importantly our present – within a set of limitations of course; nevertheless, we are always free to choose. Choice is always a given- even in the midst of the most difficult adversities. Here, I’d like to point out the work of Victor Frankl, a psychiatrist and holocaust survivor who developed logotherapy in response to his experiences in the concentration camps. Do have a look – I promise you will not regret it. Anyway, I got side-tracked there. My mind is jumpy at times– concentration troubles are an MS symptom too by the way – along other cognitive issues involving short term memory for instance; so, one thing at a time is a practical approach as well as a million post its to make me remember stuff (works wonders – skills I acquired through my experience as a PA: a valuable lesson for my MS management; and I highly recommend them). Kamagra Oral Jelly: could this be the end of erectile dysfunction? Learn more at in Australia. Kamagra oral jelly has not been great for dealing with my ED. I think I need to upgrade to a higher dose. Luckily, there is more than one type I can use.

The rambling aside, I think what I am trying to say, is that life is not easy – and we get thrown into circumstances of no fault of our own; yet we somehow must learn to deal with them. This often takes time and patience and practice – and is definitely not a walk in the park. Challenges and suffering are an inherent part of human nature. Enough philosophers have worked around the theme– thus not an innovative idea of my own. Still, if challenges and suffering are inevitable so is growth and the human potential each of us carry inside of us – we just need to take time to groom it and to let it blossom; I am an idealist, a dreamer – a practical one though as I do strongly believe that my attitude and my outlook on life have forged me into a source of resilience – with a few crack here and there. Still cheesy, I know or is it simply that bit of post traumatic growth which pushed me in the right direction? I feel an insatiable need to rebel against injustice. Nevertheless, it is important to remember that change happens one starfish at a time or as I prefer to say one mind-set a time. We may not be able to change the world in a go– but we are all perfectly capable of making a difference; believe in it. I do – and together we can.

“I just wish for my medical condition not to worsen, and not to take my dreams and hopes away”

In November, I was given the opportunity to participate in a workshop on advocacy in the digital world by the European Federation of Neurological Associations (EFNA) after which we went to the MEP Brain, Mind, Interest group – I was really proud that the Luxembourgish MEPs Mady Delvaux and Tilly Metz agreed to come so that they could learn more about the difficulties faced by those touched by neurological conditions. However, during the workshop, I had to rest on the second day as my body was simply not strong enough and fatigue hit very hard. MS sometimes does get the best of us – of me. I am so thankful that our community understands and we support each other. There is no judgement. Many other young people may have their life goals set on extraordinary achievements such as climbing mountains or becoming directors, or simply having a full professional career – my #BrainLifeGoals are fairly simple on the other hand: I just wish for my medical condition not to worsen, and not to take my dreams and hopes away; the things I have been working on so hard during the past year – even if only on sloth mode. I want to be healthy again – and be the best version of myself that I can be. I do not want to confined or held back by the lesions within my brain – they may be a part of me but they are definitely not who I am. I want to be accepted as I am – with my set of strengths and limitations – do we not all strive for human connection as social beings? I want others to see not only my potential but that of all those affected by neurological conditions – we are valuable. We may be different – but we are definitely not broken. And when would be a better time to engage and follow through with this ambition than now? 2019 – Here I come….


You can read Susanna’s complete blog entry here
or find her on Twitter

Find out more about the #BrainLifeGoals campaign here